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A mixed-methods pilot study of ‘LIFEView’ audiovisual technology: Virtual travel to support well-being and quality of life in palliative and end-of-life care patients

Authors:
  • University of Ottawa and Bruyere Research Institute

Abstract and Figures

Background There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care. Aim To determine (1) the feasibility of integrating ‘LIFEView’, a video-based software with >1600 videos of world destinations, in palliative care settings, and (2) positive, neutral or harmful effects of using ‘LIFEView’ videos. Design A mixed-methods pre–post intervention pilot study was conducted to collect feasibility and preliminary data on physical and psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life. Setting/participants Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation team who were capable of providing consent and completing the outcome measures were eligible participants. Results Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using the Edmonton Symptom Assessment System–revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations for using ‘LIFEView’, perceptions of the technology, reminiscence, ‘LIFEView’ as an adaptable technology and ongoing or future use. Conclusion A future adequately powered study to investigate the impacts of ‘LIFEView’ on patient well-being and quality of life appears to be feasible.
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https://doi.org/10.1177/0269216320918514
Palliative Medicine
1 –12
© The Author(s) 2020
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DOI: 10.1177/0269216320918514
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A mixed-methods pilot study of ‘LIFEView’
audiovisual technology: Virtual travel to
support well-being and quality of life in
palliative and end-of-life care patients
Monisha Kabir1,2 , Jill L Rice1,3,4,5, Shirley H Bush1,3,4,5, Peter G Lawlor1,3,4,5,
Colleen Webber1,4 , Pamela A Grassau1,6, Bahareh Ghaedi1,4,
Misha Dhuper5 and Rebekah Hackbusch5
Abstract
Background: There is evidence that psychosocial and spiritual interventions of short duration, such as reminiscence therapy, provide
positive impacts on quality of life and emotional and existential well-being in adults receiving palliative care.
Aim: To determine (1) the feasibility of integrating ‘LIFEView’, a video-based software with >1600 videos of world destinations, in
palliative care settings, and (2) positive, neutral or harmful effects of using ‘LIFEView’ videos.
Design: A mixed-methods pre–post intervention pilot study was conducted to collect feasibility and preliminary data on physical and
psychological symptoms, physiological indicators, spiritual well-being and aspects of quality of life.
Setting/participants: Adult patients on an inpatient palliative care unit or receiving care from a community palliative care consultation
team who were capable of providing consent and completing the outcome measures were eligible participants.
Results: Overall, 27/41 (66%) participants took part in the study. Feasibility criteria, including participant acceptability, low participant
burden, tool completion rate and retention rate, were fulfilled, though challenges were experienced with recruitment. Modest
improvements, though non-significant, were shown on preliminary data collected on physical and psychological symptoms using
the Edmonton Symptom Assessment System–revised, spiritual well-being assessed by the 12-item Functional Assessment of Chronic
Illness Therapy – Spiritual Well-Being scale and physiological measurements. Qualitative analysis revealed five themes: motivations
for using ‘LIFEView’, perceptions of the technology, reminiscence, ‘LIFEView’ as an adaptable technology and ongoing or future use.
Conclusion: A future adequately powered study to investigate the impacts of ‘LIFEView’ on patient well-being and quality of life
appears to be feasible.
Keywords
Palliative care, technology, feasibility studies, pilot projects, psychological distress, quality of life, reminiscence, life review,
existential distress
What is already known about the topic?
Patients receiving palliative care often experience psychological and existential distress towards the end of life.
Psychosocial and spiritual interventions, such as reminiscence or life review therapies, may be effective in supporting
well-being for patients in palliative care.
1Bruyère Research Institute, Ottawa, ON, Canada
2 Telfer School of Management, University of Ottawa, Ottawa, ON, Canada
3 Department of Medicine, Division of Palliative Care, University of
Ottawa, Ottawa, ON, Canada
4Ottawa Hospital Research Institute, Ottawa, ON, Canada
5 Bruyère Continuing Care, Ottawa, ON, Canada
6School of Social Work, Carleton University, Ottawa, ON, Canada
Corresponding author:
Monisha Kabir, Bruyère Research Institute, Room 281J, 43 Bruyère St.,
Ottawa, ON K1N 5C8, Canada.
Email: mkabir@bruyere.org
918514PMJ0010.1177/0269216320918514Palliave MedicineKabir et al.
research-arcle2020
Original Article
2 Palliative Medicine 00(0)
What this paper adds?
The findings of this article indicate that ‘LIFEView’, a prototype technology–based reminiscence programme, can be
used with patients receiving palliative and end-of-life care with high participant acceptability and low burden.
This pilot study demonstrates that it is feasible to integrate ‘LIFEView’ into clinical care practices on an inpatient pallia-
tive care unit and within the community for patients receiving palliative care, provided that volunteer support is
available.
Volunteer resources and flexibility in volunteer availability are essential in sustaining the programme within palliative
care settings, given participant interest in continued use of the technology.
Implications for practice, theory or policy
This study involved the engagement of seriously ill patients in a palliative care setting in order to facilitate the research-
driven development of a technology product geared towards this care context.
In this article, majority of patient and family member impressions of ‘LIFEView’ were positive, illustrating the potential
for expanding ‘LIFEView’ and similar technology-based programmes to other palliative and end-of-life care settings.
Background
Psychosocial and spiritual distress is common in adults
receiving palliative care and is associated with depression,
a desire for hastened death, hopelessness, suicidal ten-
dencies and decreased quality of life.1–5 There is increasing
recognition that psychosocial and spiritual interventions,
such as reminiscence therapy, may be effective in support-
ing well-being in palliative care.6–9 Reminiscence therapy
focuses on the recall of past memories and experiences
aided by memory triggers such as photographs, music or
meaningful objects.10 A recent systematic review on the
use of psychosocial and spiritual therapies of short dura-
tion (<4 sessions or <21 days), including reminiscence or
life review interventions, demonstrated positive effects on
patient quality of life, emotional and existential distress in
the palliative care context.11 Reminiscence programmes
delivered by care staff and using technology have been
demonstrated to improve well-being and quality of life in
individuals with dementia in community and inpatient set-
tings.12,13 However, findings from the dementia patient
population may not generalize to the specialist palliative
care context as the latter involves individuals with life-
threatening illness nearing the end of life.14 To our knowl-
edge, there is limited published evidence describing
the use of technology-based reminiscence interventions
in a specialist palliative care setting. From our literature
searches, we found one study investigating the use of vir-
tual reality technology to facilitate reminiscence with
patients receiving specialist palliative care.15 Further
research is necessary to identify technology-based remi-
niscence programmes that may be suitable for use with
patients within this care context.
Motiview™,16 was developed in 2013 by Motitech®,
a Norwegian technology company with a userbase in
North America, United Kingdom, Australia and the
Nordic countries. Motiview allows older people to bicy-
cle through familiar virtual surroundings and memories
using TV-displayed videos, ambient sound and music,
combined with a portable user-adapted exercise bicycle.
The technology consists of a continuously growing video
and music library of over 1600 videos in 30 countries.
Motiview aims to increase physical activity and memory
stimulation which may help prevent falls, improve man-
agement of complex health conditions and cognitive fit-
ness, and prevent unnecessary emergency department
visits in older people.
In early 2017, preliminary discussions about adapting
Motiview for a palliative and end-of-life care context
were held between Motitech and a senior leadership
member of Bruyère Continuing Care and the Bruyère
Research Institute. A meeting was coordinated between
Motitech’s leadership team and the senior author (R.H.)
to discuss a partnership to adapt Motiview for the pur-
poses of reminiscence and virtual travel for the palliative
care population. Key reasons for considering the adapta-
tion of Motiview for this context included its ease of use
for patients, staff and volunteers, minimal need for tech-
nological skills on the part of users, low possibility of
inducing disorientation or nausea and limited availability
of similar technologies with the same advantages.
Thus, the concept of ‘LIFEView’ was created as a proto-
type technology in development by Motitech and a pro-
ject team was assembled, including both researchers and
members of the palliative care interprofessional team.
‘LIFEView’ solely uses the audiovisual capabilities of
Motiview via a touchscreen laptop tablet connected to a
large-screen TV to facilitate reminiscence. This techno-
logical set-up was selected to enable interactivity and
minimize risks (e.g. nausea or disorientation) to the vul-
nerable palliative care population.
Feasibility studies are recommended in palliative care
due to unforeseeable changes in disease course, recruit-
ment issues and attrition rate from death and change in
functional status.17,18 The primary objective of this study
Kabir et al. 3
is to explore the feasibility of using ‘LIFEView’ as a remi-
niscence programme in palliative care. The secondary
objective is to collect preliminary qualitative and quanti-
tative data on physical, psychological, physiological and
spiritual effects of its use.
Methods
A prospective, convergent mixed-methods pilot study was
undertaken using a pre–post intervention research design.
The study was approved by local research ethics boards.
Participants were recruited between 29 August 2018 and
30 April 2019. Quantitative data were collected using
patient-rated questionnaires and a wireless blood pres-
sure monitor prior to and immediately after the interven-
tion and with an observer-rated scale during the ‘LIFEView’
session. Qualitative data were collected via field notes
throughout study participation and using semi-structured
interviews after the intervention.
Intervention
The intervention consisted of participants using ‘LIFEView’
for approximately 1 hour in the presence of the study’s
research coordinator (M.K.). A spiritual care professional
or social worker was also available on-site to provide sup-
port in the event of participant distress.
The research coordinator was trained by the technol-
ogy company, Motitech, in use of the technology. The
research coordinator assembled the TV and touchscreen
laptop tablet in the patient’s room or residence and pro-
vided participants with an in-person demonstration of
how to use the technology. If necessary, the research
coordinator offered assistance throughout the ‘LIFEView’
session.
Participants were given the option to use the touch-
screen laptop tablet to operate the software’s interface,
unless they were unable to do so due to physical limita-
tions (e.g. vision loss, reduced upper limb mobility). In
such cases, the research coordinator assisted partici-
pants with selections. Participants selected videos within
the ‘LIFEView’ interface for virtual tours of destinations
of their choice. They were also able to play music to
accompany videos from within the software interface,
pause, rewind and fast forward through videos and stop
the session at their discretion using the touchscreen lap-
top tablet.
Setting and participants
Eligible participants included adults (18 years) receiving
specialist palliative care within an inpatient palliative care
unit at a subacute teaching hospital, or within the com-
munity through interprofessional palliative care consulta-
tion service home visits. Based on clinical care team
assessments, participants who were able to complete the
study outcome measures and provide written informed
consent were included. Family members of participants
were also included in interviews provided that they were
18 years and present during the ‘LIFEView’ session.
Patients were excluded if they were experiencing delir-
ium, severe cognitive impairment, known behavioural
abnormalities or a Palliative Performance Scale score19 of
<30% at the time of consent, based on assessments by
the clinical care team.
Sample size
We aimed for a study sample of 30 participants, which is
in alignment with recommended sample sizes of between
24 and 50 for pilot studies.20–22 The research team felt that
this sample size was sufficient for reaching data satura-
tion23 for the qualitative component of this study.
Outcome measures
Primary outcome: feasibility of intervention. Available
guidance on conducting feasibility studies in palliative
care indicates the need to assess recruitment rates, reten-
tion rates, participant acceptability and burden of the
intervention and outcome measures, given the complexi-
ties and unpredictability of this care context.17,18 Comple-
tion of assessment tools and recruitment and retention
rates were calculated to determine the feasibility of con-
ducting a future larger trial using ‘LIFEView’ and its
impacts on health outcomes.
Indicators of participant acceptability of the technol-
ogy were assessed by the research coordinator during the
‘LIFEView’ session using the observer-rated Greater
Cincinnati Chapter Well-Being Observation Tool©.24–26
This tool is commonly used to assess psychosocial inter-
ventions in patient populations with cognitive deficits and
contains seven domains: interest, sustained attention,
pleasure, negative affect, sadness, self-esteem and nor-
malcy. Each domain was rated on a 0–4 scale (0 = never,
1 = rarely, 2 = some of the time, 3 = most of the time,
4 = always).
To further address acceptability, demand, implementa-
tion and practicality aspects of feasibility,27 the research
coordinator compiled process-based observational field
notes throughout the course of the study to assess:
Facilitators or barriers to using ‘LIFEView’;
Physical set-up issues;
Differences between inpatient and community
settings;
Participant burden based on adverse effects noted
by participants or informal caregivers;
Overall participant perceptions of the technology
or assessment tools;
4 Palliative Medicine 00(0)
Feedback from the participant’s clinical care team;
Indications of participant interest in ‘LIFEView’
based on duration of video viewing, perceived
length of video, family member or caregiver partici-
pation and requests for volunteer-led ‘LIFEView’
session(s) after study participation.
The feasibility of using volunteer services to support
the long-term sustainability ‘LIFEView’ was assessed
based on the number of participant requests for addi-
tional sessions and volunteer availability to meet the
demand until patient death or decline in condition and
recorded in the research coordinator’s field notes.
Secondary outcomes. The following outcome data were
collected by the study’s research coordinator at least 24 h
before (pre-‘LIFEView’) and immediately after using ‘LIFE-
View’ (post-‘LIFEView’). If necessary, reading and writing
assistance was provided by the research coordinator:
Change in psychological and physical symptoms.
The Edmonton Symptom Assessment System–
revised (ESAS-r),28,29 a nine-item symptom assess-
ment tool evaluating pain, tiredness, drowsiness,
nausea, lack of appetite, shortness of breath,
depression, anxiety, well-being and sleep, was
completed by participants. Each item is rated by
patients on a 0–10 scale (0 = best possible,
10 = worst possible).
Change in physiological indicators. The research
coordinator used a wireless cuff to measure partici-
pant heart rate and blood pressure.
Change in spiritual well-being. The 12-item
Functional Assessment of Chronic Illness Therapy
– Spiritual Well-Being scale (FACIT-Sp-12)30 was
completed by participants. Each item is rated by
patients on a 0–4 scale (0 = not at all, 4 = very
much).
These outcome measures were selected for prelimi-
nary data collection in this pilot study to determine the
value of further exploration in a future adequately pow-
ered study. It was surmised that use of ‘LIFEView’ may
impact participants’ physical and psychological symp-
toms, spiritual well-being and physiological indicators.
The ESAS-r and FACIT-Sp-12 were selected as assessment
tools given their validity for use in palliative and end-of-
life care contexts.28–30 Blood pressure and heart rate were
measured to determine whether participants experienced
calming effects after use of the intervention.
A semi-structured, audio-recorded interview was con-
ducted by the research coordinator within 24 h post-
‘LIFEView’ with each participant, and if present, their
family members. These interviews explored the overall
participant and family experience of ‘LIFEView’. The pro-
cedures for collecting these outcome measures are out-
lined in Figure 1.
Statistical analysis
Quantitative data were analysed using SAS31 software.
Feasibility data, participant characteristics and outcomes
were described using descriptive statistics. Changes in
pre- and post-‘LIFEView’ outcomes were analysed using
the Wilcoxon signed rank test, with a p value of <0.05
considered statistically significant.
Qualitative analysis
Audio-recorded interviews were transcribed verbatim
and analysed using NVivo 12.32 Qualitative data collected
from interviews and observational field notes were ana-
lysed using an iterative, inductive thematic analysis
approach.33,34 Codes and themes were generated from a
subset of the data using group open coding.35 Open cod-
ing was considered complete when the group (M.K., B.G.
and M.D.) agreed that there were minimal new concepts
or themes emerging from the data. Subsequent to open
coding, two researchers (M.K. and B.G.) independently
coded the full qualitative data set in accordance with
emerging patterns or themes, refining themes as needed.
Disparities in coding were discussed and negotiated with
a third individual (M.D.) to ensure analytical rigour.
Results
Patients admitted to the inpatient palliative care unit
(30/394; 8%) or referred to a single community palliative
care service (11/673; 2%) were approached by their clinical
care team for verbal assent to be contacted by the research
team. Of these individuals, 31/41 (76%) were recruited to
the study after consenting to participate. Subsequent to
consenting, three participants requested their withdrawal
from the study due to feeling ‘foggy’ (n = 1) and progressive
illness or fatigue (n = 2). One participant died prior to taking
part in the study. These participants were excluded from
data collection and analysis. The remaining 27/41 (67%)
participants took part in the intervention with their family
members (n = 16). Detailed information on patient partici-
pation is provided in Figure 2. Demographics for included
participants are presented in Table 1.
Feasibility of ‘LIFEView’ intervention
For the 27 participants who used ‘LIFEView’, the mean
viewing time was 60.6 min (SD: 17.4) and 23 (85.2%) ver-
balized enjoying the session. The Greater Cincinnati
Chapter Well-Being Observation Tool© was completed for
all 27 participants (Table 2). High levels of participant
interest (mean: 3.70/4, SD: 0.72), attention (mean: 3.74/4,
Kabir et al. 5
SD: 0.71) and pleasure (mean: 3.56/4, SD: 0.85) were
observed during ‘LIFEView’ sessions, while minimal nega-
tive effects were noted. Largely positive participant per-
ceptions of ‘LIFEView’ from observational field notes,
interview data and overall completion of tools (15/27;
56%) provided further evidence for participant accepta-
bility of the technology and study procedures.
Majority of missing data for tool completion was due
to changes in cognitive function as assessed by the par-
ticipant’s clinical care team or participant refusal.
Minimal occurrences of missing data occurred due to
researcher error (n = 4) where ‘Sleep’ was not entered in
the blank space for an additional item on the ESAS-r
form. No major barriers were encountered with respect
to the physical set-up of the technology based on field
notes collected.
Participant burden was minimal; there were no
adverse effects specific to the use of ‘LIFEView’ and few
concerns noted by participants or their caregivers.
Specific concerns included participant fatigue poten-
tially obstructing participation (n = 1), uncertainty of
their enjoyment of the session (n = 1) and the potential
for future ‘LIFEView’ users experiencing sadness due to
their reminiscences (n = 1). Participants who were con-
cerned about their fatigue and enjoyment of the session
took part in the study fully. The participant who noted
that other users may feel sadness elaborated that the
benefits offset the harms.
Inial contact with
the research team
•Members of the clinical care team approached eligible parcipants for verbal assent to be
contacted by the research team.
•If verbal assent was provided, the clinical team member forwarded the parcipant's contact details
to the research coordinator in a secure manner.
1st visit from the
research team
•The research coordinator provided a detailed explanaon of the study and obtained wrien
informed consent from parcipants, and if available, their family members.
•The following pre-'LIFEView' measures were collected by the research coordinator: i) parcipant's
heart rate and blood pressure measurements, ii) parcipant ratings for the ESAS-r scale , iii)
parcipant rangs on the FACIT-Sp-12 quesonnaire.
2nd visit from the
research team
(~24 hours aer 1st
visit)
•The research coordinator, trained in using 'LIFEView' by the technology company, assembled the
'LIFEView' system in the parcipant's room/residence and provided an in-person demonstraon of
how to use the technology to parcipants.
•Parcipants were able to use 'LIFEView' once as part of the study for approximately 1 hour in the
presence of the research coordinator. A spiritual care professional or social worker was available
to provide support in the event of parcipant distress.
•The research coordinator composed observaonal field notes and rangs for the Greater
Cincinna Chapter Well-Being Observaon tool©during this visit.
•The following post-'LIFEView' measures were collected by the research coordinator:
i) parcipant's heart rate and blood pressure measurements, ii) parcipant rangs for the ESAS-r
scale, iii) parcipant rangs on the FACIT-Sp-12 quesonnaire.
•The research coordinator conducted a brief interview with participants and their family members.
Aer parcipaon
in the study
•Parcipants were provided the opon of connued access to the 'LIFEView' technology via a
trained volunteer.
•The number of volunteer-led sessions provided to parcipants were counted unl parcipants
declined in condion or died.
Figure 1. Process map of study procedures from initial contact with the research team.
ESAS-r: Edmonton Symptom Assessment System–revised; FACIT-Sp-12: Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being scale
(12-item).
6 Palliative Medicine 00(0)
Assessed for eligibility (n= 41)
Palliative care unit (n=30)
Community (n=11) Excluded (n= 10)
Declined to participate (n= 4)
Phone calls not returned (n= 1)
Undecided about participation (n= 1)
Progressive illness or fatigue (n= 2)
Death (n= 2)
Assessed for objective 1: Feasibility of ‘LIFEView’ intervention
Greater Cincinnati Chapter Well-Being Observation Tool© (n=27) and field notes (n=41)
Assessed for objective 2: Aspects of well-being
ESAS-r at baseline
-Items 1-9 (n= 24): missing data due to cognitive impairment (n= 2), patient refusal (n= 1)
- Item 10 and ESAS-r score (n= 21): Missing data due to researcher error (n= 3), cognitive impairment
(n= 2), patient refusal (n= 1)
FACIT-Sp-12 at baseline
-Meaning/Peace subscore (n= 26): Missing data due to cognitive impairment (n= 1)
-Faith subscore and total score (n= 25): Missing data due to cognitive impairment (n= 2), patient
refusal (n= 1)
Change in ESAS-r after intervention
-Items 1-9 (n=19): missing pre- and post-‘LIFEView’ data due to cognitive impairment (n= 2), patient
refusal (n= 1); missing post-‘LIFEView’ data due to cognitive impairment (n= 2), patient refusal (n= 3)
- Items 10 and ESAS-r score (n= 15): missing pre- and post-‘LIFEView’ ESAS-r due to cognitive
impairment (n= 2), patient refusal (n= 1); missing post-‘LIFEView’ data due to cognitive impairment
(n= 2), patient refusal (n= 3); missing pre-‘LIFEView’ and/or post-‘LIFEView’ item 10 score only due
to research error (n= 4)
Change in FACIT-Sp-12 after intervention
-Meaning/Peace subscore (n= 24): Missing data due to cognitive impairment (n= 2), patient refusal
(n= 1)
-Faith subscore and total score (n= 23): Missing data due to cognitive impairment (n= 2), patient
refusal (n= 2)
Change in physiological measures after intervention (n=26): Missing data due to cognitive impairment (n= 1)
Semi-structured interviews (n=24): Missing data due to progressive illness or fatigue (n= 2), cognitive failure
(n= 1)
Discontinued intervention (n= 0)
Received allocated intervention (n= 27)
Palliative care unit (n=19)
Community (n=8)
Allocation
Assessment
Follow-Up
Consented to participate in study (n= 31)
Palliative care unit (n=23)
Community (n=8)
Excluded (n= 4)
Cognitive impairment (n= 1)
Progressive illness or fatigue (n= 2)
Death (n= 1)
Enrollment
Screened
Total number of patients:
Admitted to palliative care unit (n=394)
Referred to community palliative care services (n= 673)
Figure 2. Modified CONSORT extension-pilot and feasibility trials36 flow diagram.
ESAS-r: Edmonton Symptom Assessment System–revised; FACIT-Sp-12: Functional Assessment of Chronic Illness Therapy – Spiritual Well-Being scale
(12-item).
After participation in the research study, participants
were given the option to request continued access to
‘LIFEView’. Following a participant’s request for additional
sessions, volunteers visited patients with the technology.
Additional volunteer-led sessions were requested by
18/27 (66.7%) participants, 7/27 (25.9%) declined this
Kabir et al. 7
offer and 2/27 (7.4%) had unknown preferences for addi-
tional sessions. Overall, 23 volunteer-led sessions were
provided to 8/18 (44.4%) of those who requested contin-
ued access to ‘LIFEView’, for a mean of 2.88 additional
sessions per participant (SD: 2.48). The 10/18 (55.6%) par-
ticipants who requested but did not receive volunteer-led
sessions were no longer responsive, somnolent or
deceased by the time a volunteer was available for a sub-
sequent session.
Aspects of participant’s well-being and
overall experience of ‘LIFEView’
Quantitative results. Pre-‘LIFEView’ ESAS-r and FACIT-
Sp-12 scores are presented in Supplementary Table 1. No
significant differences were found in the change in ESAS-
r ratings (Supplementary Table 2), FACIT-Sp-12 scores
(Supplementary Table 2) or blood pressure and heart
rate measurements (Supplementary Table 3) between
pre- and post-‘LIFEView’ assessments. Of note, minor
improvements were demonstrated for the change in
ESAS-r and FACIT-Sp ratings, particularly for ESAS-r rated
well-being, tiredness and anxiety items and meaning/
peace and faith subscales of the FACIT-Sp. Heart rate
measurements pre- to post-intervention showed a nega-
tive mean difference.
Qualitative results. Overall, 24 participants and 16 family
members participated in interviews (mean dura-
tion = 13.76 min, SD: 7.23). Analysis of interview tran-
scripts (n = 24) and observational field notes (n = 41)
yielded five major themes encompassing the participant
experience of ‘LIFEView’. The qualitative data reflected an
overarching theme related to the temporality of reminis-
cence and meaning-making, with a specific focus on par-
ticipant creations of meaning from the past, and into the
present and future. ‘LIFEView’ offered participants the
potential to explore meaning-making by enabling experi-
ences of destinations they were motivated to visit, but
had not had an opportunity to see in person, or to remi-
nisce about places they had visited in the past. Challeng-
ing present-day experiences of illness and use of the
technology as an escape were also woven into participant
motivations, allowing participants to make meaning and
reminisce to a time and place prior to, or beyond their
present-day experience.
Positive, neutral and negative impressions of the
technology illustrated participant experiences of
‘LIFEView’. Majority of participants (14/16; 88%) who
noted one or more negative perceptions of ‘LIFEView’
had predominantly positive experiences across the
qualitative data and reported enjoying the session over-
all. Participants engaged in reminiscing and creating
meaning from these past experiences, particularly in
the presence of family members. Other participants dis-
cussed leaving a legacy for their loved ones. Other
themes included participant views of ‘LIFEView’ as an
adaptable technology, wherein participants noted rec-
ommendations or appealing components, and ongoing
or future use of the technology. These themes are fur-
ther delineated in Table 3.
Discussion
Main findings
Overall, this pilot study provides evidence that ‘LIFEView’
technology is feasible to integrate into existing care prac-
tices as a reminiscence and virtual travel programme for
adults receiving inpatient and community palliative care
services. For most participants, use of ‘LIFEView’ videos
and accompanying music yielded extensive conversation,
reminiscence and meaning-making during sessions and
interviews. Correspondingly, previous studies using remi-
niscence or life review interventions in palliative care
Table 1. Patient demographics (n = 27).
N (%)
Age Mean: 70.5 (SD: 10.0)
Sex
 Male 15 (55.6)
 Female 12 (44.4)
Diagnosis
 Cancer 21 (77.8)
 Non-cancer 6 (22.2)
Care setting
 Palliative care unit 19 (70.4)
 Community 8 (29.6)
Number of days from pre-
‘LIFEView’ assessment to
‘LIFEView’ session
Mean: 4.2 (SD: 4.6)
SD: standard deviation.
Table 2. Results of Greater Cincinnati Chapter Well-Being
Observation Tool© for all participants (n = 27) during their
‘LIFEView’ sessions, as assessed by a single observer.
Domain Mean (SD)
Interest 3.70 (0.72)
Sustained attention 3.74 (0.71)
Pleasure 3.56 (0.85)
Negative affect 0.07 (0.38)
Sadness 0.07 (0.27)
Self-esteem 3.33 (1.30)
Normalcy 3.67 (1.07)
SD: standard deviation.
Each domain is rated on a 0–4 scale (0 = never, 1 = rarely, 2 = some of
the time, 3 = most of the time, 4 = always).
8 Palliative Medicine 00(0)
Table 3. Themes and subthemes of the participant experience of ‘LIFEView’ arising from interviews (n = 24; 796 references) and field notes (n = 41; 675 references).
Themes Subthemes Number of
references in data
seta; number of
participants
Description Illustrative quote
Overarching Meaning-Making (Present-Past-Future) and Reminiscence
(A) Motivations
or reasons for
use of ‘LIFEView’
To gain new travel
experience
124; n = 25  Wanting to experience a new location
that they had not seen before or to which
they had endeavoured to travel to 1 day,
facilitating meaning-making of the present
or future.
P02: ‘I’m probably not able to see anymore . . .
like I wanted to see some parts of Canada that I
never saw. . . one of my friends went to the Gaspé
region and she said it was beautiful, but I never
saw it, and Newfoundland and Labrador I’ve never
been to’.
To overcome impacts
of illness
98; n = 28  Elements of illness participants
perceived as posing a barrier to
participating in activities as they used to in
the past or future, allowing for meaning-
making of the present or past.
P01: ‘Now I wouldn’t be able to go [travel] because
I can’t walk’.
To facilitate
reminiscence
83; n = 20  Desiring a virtual visit to a location in
order to rekindle memories and enabling
meaning-making of the past.
P10: ‘I just left Calgary and I know my way around
there so easily. It was really enjoyable to watch
those videos of Calgary. It was hopefully not saying
goodbye for the last time, but seeing my home’.
To distract
themselves or allow
them an escape
22; n = 9  Indicating that their use of ‘LIFEView’
was a way to occupy or distract themselves
in their current circumstances.
P04: ‘It is a distraction from the present situation
. . . It is enough for a while, for example, for an
hour or two hours’.
(B) Perceptions
of ‘LIFEView’
before, during,
and after
session
Positive perceptions 256; n = 25  Any mentions of enjoyment, interest,
feelings of familiarity even in foreign
territory, feeling physically present at the
destination they chose to virtually visit,
finding the videos or music calming, or
feelings of time flying by
 Viewing ‘LIFEView’ as being important
or meaningful to use in their respective
circumstances.
P35: ‘That’s beautiful! Makes me feel cloud high!
. . . It uplifts me and makes me come out of my
sadness’.
P36: ‘The videos were very calming . . . I could
picture putting it [‘LIFEView’] on and getting ready
for a nap’.
Negative perceptions 86; n = 16  Any mentions of disappointment due
to misaligned expectations, boredom due
to the pace of the video, or otherwise not
particularly enjoying a video’s content.
P20: ‘I thought it was going to take me back, take
me back in this other world . . . That’s why I was
looking forward to it. To be honest with you right
now, I’m very disappointed . . . I thought there’d
be more of a 3D effect that would allow me to feel
like I was inside the TV, not watching a program’.
Neutral perceptions 56; n = 10  Any remarks of expectations being met
but not exceeded in regards to ‘LIFEView’,
or no particular opinions about the length
of time they spent watching a particular
video.
P13: ‘It [‘LIFEView’] makes me feel okay . . . it’s
just modern technology’.
P04: ‘. . . it [‘LIFEView] was about the same as
what I was expecting. That’s about it. Neither
better nor worse’.
(Continued)
Kabir et al. 9
Themes Subthemes Number of
references in data
seta; number of
participants
Description Illustrative quote
Concerns, issues
or barriers to using
‘LIFEView’
20; n = 9  Trepidations or hindrances to
participating in the study overall or in
using ‘LIFEView’
P19: ‘The only drawback I might see is that it might
cause somebody some sadness that they may
never get to experience it [the travel destination]
. . . but I think probably the benefits outweigh the
negatives’
(C)
Reminiscence,
life review,
or legacy
discussions
247; n = 26  Recollections and sharing of past
memories or life experiences, particularly
with the presence of a family caregiver
 Relaying legacies participants would
like to leave for their loved ones
 Meaning-making of the past.
P06: ‘The water brought me back to fishing with
my cousins and my brothers. It takes me back,
memories. We were all outdoors, yeah’.
P32’s family member: ‘I’m really struck by how
rapidly we got into reminiscing. We know the
purpose of the videos, but I, myself, at least
was not thinking about that and they seemed to
naturally lend themselves to – I mean, here you
have two family members. It might be different if
we were friends who hadn’t shared a childhood’.
Concept of ‘LIFEView’
as an adaptable or
modern technology
Recommendations
for technological
changes
194; n = 21  Changes that participants thought
might improve the technology or any new
destinations the technology should add to
its library
 Recommendations included increasing
the music library, more coverage of
cultural and historical aspects of locations,
addition of narration or a text overlay to
provide facts about the destination.
P02: ‘It would have been interesting to see if he
had stopped . . . and focused on the statue here.
Or at the end, there was that theatre, the square
. . . go from maybe house to house or building
to building and showing not only the paths, but
maybe go sideways, just for a few half a second,
or half a minute, it would have a little more
interesting’.
Components
participants liked or
found easy to use
140; n = 24  Technological aspects of ‘LIFEView’
that participants enjoyed or liked, found
easy to use, or features did not require
further changes.
P22: ‘I like the travel aspect of it, and the clarity
of the picture. The clarity of the picture was really
good . . . It didn’t seem to need any music or
anything . . . I liked the ambient sound’.
Ongoing or future use
of ‘LIFEView’
119; n = 25  Indicating a desire to continue using
‘LIFEView’ via volunteer services after
participation in the research study, or
recommending its use for other patients.
P03: ‘I kind of think it would be helpful for people
who are just sitting and looking at the four walls,
as we often do, which is not good to do . . .’
aThe number of times a particular theme or subtheme was coded across the data set, including both interview transcripts and field notes.
Table 3. (Continued)
10 Palliative Medicine 00(0)
contexts demonstrated reminiscence as an effective
method of finding meaning in one’s life experiences and
also found associated reductions in psychosocial and
spiritual distress.7,8 Future research with ‘LIFEView’
should encourage family participation, as individuals with
pre-existing relationships to participants may increase
instances of reminiscence and meaning-making, and thus
potential improvements in well-being.
According to the literature, the ‘well-being’ item on
the ESAS-r demonstrates a modest correlation with qual-
ity of life in patients with advanced cancer.37 Our study
found a non-significant but potentially meaningful
change in the well-being item of the ESAS-r and improve-
ments in spiritual well-being, physical and psychological
symptoms and blood pressure measurements. These
measures warrant in-depth assessment in a larger study
with adequate statistical power, particularly in light of
literature showing improved quality of life and psychoso-
cial and spiritual well-being with patient use of similar
brief psychosocial interventions.7,8,11 A new study is cur-
rently underway to further examine these outcomes.38
Of note, well-being and quality of life in advanced cancer
patients can be multi-faceted;39 therefore, forthcoming
studies should include a comprehensive assessment of
patient well-being and quality of life without increasing
patient burden.
Of note, majority of negative participant perceptions
of ‘LIFEView’ appeared to coincide with unmet initial
expectations, particularly misperceptions of the technol-
ogy (e.g. use of virtual reality headsets or videos enabling
extensive visits of cultural aspects of each destination). In
future work using ‘LIFEView’, participants should be pro-
vided with a clear explanation and/or a picture of the
technology to reduce misconceptions.
A key challenge encountered in this study was a low
recruitment rate across both inpatient and community
settings, which reflects the well-documented difficulties
of recruiting in palliative care.40–45 For future work, appli-
cation of established strategies may improve recruitment,
such as communication and outreach to the clinical care
team,45 increased promotion of the study to partici-
pants,45,46 using simple study methods43–45 and ongoing
recruitment rate monitoring.41
Our study’s completion rate of patient-reported assess-
ment tools (56%) is comparable to prior pilot and feasibil-
ity studies in palliative care (50%–60%).47–49 The use of a
mixed-methods study design may have contributed to
participant completion of outcome measures through
minimizing participant burden,44 while also accounting for
a multitude of perspectives.
The availability of volunteer resources is fundamental
for sustainability of the technology within care settings
after the culmination of the research study. Although
66.7% of participants requested additional sessions, only
44.4% were able to access volunteer-led sessions likely
due to unpredictable or rapid changes in patient condition
and limited volunteer availability. Ongoing efforts should
address the accessibility and flexibility of volunteer
resources for the provision of ‘LIFEView’ sessions.
Based on this current work, considerations for future
research on psychosocial and existential programmes in
palliative care include increasing researcher, and if
applicable, volunteer flexibility in delivering the inter-
vention due to unpredictable changes in patient prog-
nosis, and ensuring the prevention of missing data. Use
of novel technology in research may result in partici-
pants’ expectations being unmet due to misperceptions
of the equipment. Researchers using such technology in
future work should make efforts to clearly explain the
technology being used, possibly even providing a picto-
rial or other visual cue to reduce the potential for par-
ticipant misconceptions. Forthcoming studies should
endeavour to enhance recruitment rates using strate-
gies outlined in the literature41,43–46 and increase the
scope of the study sample to include other care con-
texts where patients may have palliative and end-of-life
care needs.
Strengths and limitations of the study
Given high participant acceptability of the intervention
and study procedures, and low participant burden, this
study demonstrates that it is feasible to use ‘LIFEView’ as
a technology-based reminiscence programme in palliative
care. Considering the complexities and high attrition rates
(30%–50%) typical of the palliative care context,44,50 the
retention rate (67%) of participants in this study is note-
worthy but must be interpreted with caution due to the
small sample size.
Key limitations of this pilot study include lack of
blinding and the use of a small sample size across a sin-
gle inpatient setting and one community service. The
use of a single-arm study design reduces the generaliz-
ability of results, while also potentially introducing bias.
In addition, poor recruitment rates and selection bias
may have been caused by (1) gatekeeping, the previ-
ously documented hesitance well-intentioned clinicians
may experience in approaching patients for research
studies,46 and (2) clinicians overlooking approaching
eligible patients amid their clinical duties. Targeted con-
tact with clinical team members may improve recruit-
ment rates in future research. The observer-rated scale
and field notes used in this study are a possible source
of bias due to inherent difficulties of remaining fully
objective in observational data collection. Furthermore,
the presence of the research coordinator during the
‘LIFEView’ session and data collection procedures may
have introduced observer bias.
Kabir et al. 11
Conclusion
This pilot study illustrates the feasibility of using ‘LIFEView’
technology as a reminiscence and virtual travel programme
within inpatient and community palliative care settings.
Preliminary quantitative data demonstrated areas for
future exploration in a larger study. Qualitative results dem-
onstrated the patient and family caregiver receptiveness
to the technology, supporting its use within the palliative
care context.
Acknowledgements
The authors would like to thank Motitech AS® for providing
‘LIFEView’ licences and technological support for the duration
of this study, the volunteers (Misha Dhuper, Wafaa Kaouache
and Layla Ziha) who contributed their time to providing addi-
tional ‘LIFEView’ sessions to participants and their informal car-
egivers after their participation in the research study and the
many clinical care team members across both the inpatient and
community palliative care settings who contributed their time
to assist with recruitment. This study would not have been pos-
sible without the contributions of all of the above individuals.
Author contributions
M.K. contributed to ethics submissions, data collection and
analyses, manuscript preparation; J.L.R. to methodological sup-
port and critical appraisal of manuscript; S.H.B. to methodologi-
cal support and critical appraisal of manuscript; P.G.L. to
methodological support and critical appraisal of manuscript;
C.W. to methodological support, data analyses, critical appraisal
of the manuscript; P.A.G. to methodological support, data anal-
yses, critical appraisal of the manuscript; B.G. to data analyses,
critical appraisal of the manuscript; M.D. to data analyses, criti-
cal appraisal of the manuscript; and R.H. to methodological sup-
port, critical appraisal of the manuscript.
Data sharing
The study data are held at the Bruyère Research Institute.
Requests for additional information about study data or results
can be forwarded to the corresponding author (M.K.).
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship and/or publication of this
article.
Ethical approval
The study was approved by the Bruyère (Protocol #M16-19-019)
and Ottawa Health Science Network (Protocol #20180589-01H)
research ethics boards on 9 July 2018 and 24 August 2018,
respectively.
Funding
The author(s) disclosed receipt of the following financial support
for the research, authorship and/or publication of this article:
This work was supported by a Spark 2017 Centre for Aging and
Brain Health Innovation (CABHI) grant.
Technology details
‘LIFEView’ is a prototype technology. As per discussions with
Motitech AS®, the software developer, the technology has been
referred to within quotations throughout this article. The name
of the technology is subject to change with future iterations
following development and trademarking.
ORCID iDs
Monisha Kabir https://orcid.org/0000-0002-4456-7661
Colleen Webber https://orcid.org/0000-0001-9193-5386
Supplementary material
Supplemental material for this article is available online.
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... Suitable VR experience content has been described as low-immersion, effective and accepted by palliative care participants in previous studies. Researchers have noted that VR interventions' participant burden was minimal, with participants reporting sadness due to reminiscences stating that the benefits outweighed the harm (Brungardt et al. 2021;Kabir et al. 2020;Perna et al. 2021). VR, therefore, offers an option to occupational therapists for use in palliative care settings. ...
... VR has been recommended as a safe adjunct to conventional medicine symptom management of palliative care and patients with cancer (Johnson et al. 2020;Niki et al. 2019). Studies in Japan and Canada have demonstrated the effectiveness and safety of VR travel as reminiscence therapy on relieving symptom burden in palliative care patients and their carers (Kabir et al. 2020;Niki et al. 2019). The act of reviewing one's life, or reminiscence therapy, may alleviate a person's psychological distress and promote spiritual well-being (Wang et al. 2017). ...
... The benefits of VR for palliative care patients may include relieving boredom, a respite from the inpatient environment, and promoting relaxation and joy (Nwosu et al. 2021;Perna et al. 2021) in addition to its non-pharmacological analgesic effects (Jones et al. 2016;Pourmand et al. 2018). For example, modified end-of-life goals, such as travelling to the beach or visiting a place of significance in one's life, may be achieved using VR (Kabir et al. 2020). VR interventions may also provide opportunities for sharing experiences and meaning-making with carers (Nwosu et al. 2021). ...
Article
Full-text available
Background Virtual reality (VR) offers the prospect of a safe and effective adjunct therapeutic modality to promote mental health and reduce distress from symptoms in palliative care patients. Common physiological and psychological symptoms experienced at the end of life may impact the person’s participation in day-to-day activities that bring them meaning. The purpose of this study was to examine the effect of VR interventions on occupational participation and distress from symptoms. Objectives To describe the stimulus, results, and learnings from a single-site pilot study of virtual reality therapy in a specialist palliative care setting. Methods Participants engaged in a VR session lasting from 9 to 30 minutes related to coping with pain, inner peace and mindfulness, adventure, and bucket list. Methods measures The pilot prospective quantitative observational cohort study was conducted from November 2021 through March 2022 using a pre-post VR intervention research design. Quantitative data was collected using patient-rated assessments and a wireless pulse oximeter. Occupational performance, satisfaction, and distress symptoms were measured using the Canadian Occupational Performance Measure and the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). The intervention and study design adhered to international guidelines. Results Ten participants engaged in the VR interventions. Data showed significantly improved occupational performance and satisfaction scores ( p < .001), decreases in PCOC SAS distress from pain ( p = .01), fatigue ( p < .001), and heart rate ( p = .018). No adverse side effects were observed. Significance of results Outcomes included an analysis of virtual reality’s effectiveness to alleviate symptom burden and increase occupational participation for palliative care patients. Of specific interest to the research team was the application of virtual reality in a community–based and inpatient palliative care context to supplement allied health services and its feasibility of integration into standard palliative care. Conclusion VR therapy showed positive improvements in the participants’ occupational performance, satisfaction, and distress from pain and fatigue.
... Interview: [43,[83][84][85] Focus group: [43] Survey: [86,87] Data derived from smartphone: [88] Interview: [89] Survey: [49,50,90,91] Observation: [92] 2 Validated questionnaire: ...
... Interview: [41,[83][84][85] Focus group: [114] Workshop: [46] Data derived from smartphone: [88] Interview: [47,115,116] Survey: [49,90,91,[117][118][119] Observation: [92,120] Validated questionnaire: ...
... QoLBC: [71] (Breast cancer) FACIT-SP-12: [92] (Chronic illness) DDS: [102] (Diabetes) ICECAP-O: [54] (Elderly) IVI-VLV: [73,74] (Low vision) Social Me Defined by author: [29,34,80,[109][110][111][123][124][125][126][127][128] [129] ...
Thesis
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... NIKI et al. (2019) used skin electrical activity, heart rate and skin temperature to assess the symptoms of anxiety, depression, and pain in people with a history of sub-health diseases, and the results showed that participants' anxiety and depression were more significantly improved [21]. MOSCATO et al. (2021), KABIR et al. (2020) and Wu et al. (2022) believe that virtual tourism based on VR technology can effectively reduce patients' anxiety and depression and improve the negative emotions of cancer patients [22][23][24]. Palomba et al. (2000) found that when subjects were shown videos of different quality, the subjects' autonomic nervous responses changed. ...
... NIKI et al. (2019) used skin electrical activity, heart rate and skin temperature to assess the symptoms of anxiety, depression, and pain in people with a history of sub-health diseases, and the results showed that participants' anxiety and depression were more significantly improved [21]. MOSCATO et al. (2021), KABIR et al. (2020) and Wu et al. (2022) believe that virtual tourism based on VR technology can effectively reduce patients' anxiety and depression and improve the negative emotions of cancer patients [22][23][24]. Palomba et al. (2000) found that when subjects were shown videos of different quality, the subjects' autonomic nervous responses changed. When subjects watched videos of low quality, the skin conductance response increased, and the typical characteristics of stress response appeared, inducing negative emotional experience of the subjects [25]. ...
Article
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Impacted by the COVID-19 epidemic, the human sub-health in national high-tech zones (hereinafter referred to as high-tech zones) has become more prominent. It is critical for the mental sub-health group in the high-tech zone to relieve the anxiety and tension caused by the pressure of life and work. This paper uses SketchUp virtual engine (Unity 2019) software, and 3D roaming technology to carry out the ecological landscape transformation design of the Baotzixi ecological corridor in the East Lake High-tech Zone, to construct a 3D roaming landscape scene and measure its therapeutic effect by inviting subjects to participate in an interactive experience experiment on the ErgoLAB platform. The results illustrate that: (1) the thermogram trend shows that the more attractive the 3D roaming landscape scene is, the stronger the subjects’ interest is; (2) the participants have a positive emotional arousal state in the immersive experience of the 3D roaming landscape scene after the modification design; and (3) the mean skin conductance (SC) fluctuation variance of the subjects is 5.819%, indicating that the healing effect is significant in the state of positive emotional arousal. The research results show that there is a connection between the subjects and the 3D roaming landscape scene after the transformation design of “high interest, emotional arousal and significant healing”.
... Likewise, as most patients do not wish to die in a hospital and would prefer the comfort of their home and company of their loved ones, patients can choose their ideal location of care during their last days using VR [90]. Research has shown that such virtual tours can improve spiritual wellbeing, physical and psychological symptoms, and blood pressure measurements in patients with advanced cancer [91]. ...
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Background: The application of virtual reality (VR) in clinical settings is growing rapidly, with encouraging results. As VR has been introduced into complementary and alternative medicine (CAM), a systematic review must be undertaken to understand its current status. Aim: This review aims to evaluate and summarize the current applications of VR in CAM, as well as to explore potential directions for future research and development. Methods: After a brief description of VR technology, we discuss the past 20 years of clinical VR applications in the medical field. Then, we discuss the theoretical basis of the combination of VR technology and CAM, the research thus far, and practical factors regarding usability, etc., from the following three main aspects: clinical application, teaching, and scientific research. Finally, we summarize and propose hypotheses on the application of VR in CAM and its limitations. Results: Our review of the theoretical underpinnings and research findings to date leads to the prediction that VR and CAM will have a significant impact on future research and practice. Conclusion: Although there is still much research needed to advance the science in this area, we strongly believe that VR applications will become indispensable tools in the toolbox of CAM researchers and practitioners and will only grow in relevance and popularity in the era of digital health.
... In comparing the different definitions of well-being, we found that similar terms did not always refer to the same content and that 2 varying terms were used to say the same thing. For example, spiritual well-being was used to refer to not only self-transcendence [99] but also self-acceptance [83]. In addition, depression and anxiety were termed interchangeably as belonging to the domains of emotional well-being [90], mental well-being [87], and psychophysical well-being [89]. ...
Article
Background: Digital health refers to the proper use of technology for improving the health and well-being of people and enhancing the care of patients through the intelligent processing of clinical and genetic data. Despite increasing interest in well-being in both health care and technology, there is no clear understanding of what constitutes well-being, which leads to uncertainty in how to create well-being through digital health. In an effort to clarify this uncertainty, Brey developed a framework to define problems in technology for well-being using the following four categories: epistemological problem, scope problem, specification problem, and aggregation problem. Objective: This systematic scoping review aims to gain insights into how to define and address well-being in digital health. Methods: We followed the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist. Papers were identified from 6 databases and included if they addressed the design or evaluation of digital health and reported the enhancement of patient well-being as their purpose. These papers were divided into design and evaluation papers. We studied how the 4 problems in technology for well-being are considered per paper. Results: A total of 117 studies were eligible for analysis (n=46, 39.3% design papers and n=71, 60.7% evaluation papers). For the epistemological problem, the thematic analysis resulted in various definitions of well-being, which were grouped into the following seven values: healthy body, functional me, healthy mind, happy me, social me, self-managing me, and external conditions. Design papers mostly considered well-being as healthy body and self-managing me, whereas evaluation papers considered the values of healthy mind and happy me. Users were rarely involved in defining well-being. For the scope problem, patients with chronic care needs were commonly considered as the main users. Design papers also regularly involved other users, such as caregivers and relatives. These users were often not involved in evaluation papers. For the specification problem, most design and evaluation papers focused on the provision of care support through a digital platform. Design papers used numerous design methods, whereas evaluation papers mostly considered pre-post measurements and randomized controlled trials. For the aggregation problem, value conflicts were rarely described. Conclusions: Current practice has found pragmatic ways of circumventing or dealing with the problems of digital health for well-being. Major differences exist between the design and evaluation of digital health, particularly regarding their conceptualization of well-being and the types of users studied. In addition, we found that current methodologies for designing and evaluating digital health can be improved. For optimal digital health for well-being, multidisciplinary collaborations that move beyond the common dichotomy of design and evaluation are needed.
... Similarly, there is emerging uptake of virtual reality (VR) technologies for paediatric and adult populations. Specifically, VR has been used to support advance care planning (Hsieh, 2020) as well as symptom management and quality of life (Kabir et al., 2020) in palliative care patients. ...
Chapter
This chapter explores the use of digital technologies in the context of public health palliative care. In an increasingly digital society, there is a growing imperative to understand the benefits and limitations of the use of digital technologies within a social model of care. Through a dual lens of digital public health and thanatechnology, this chapter provides an overview of the digital technologies used in palliative care, outlining their application to the growing field of public health palliative care. Despite the inherent risks of technological developments in society, a broad range of public health palliative care benefits can be realized in both clinical and community settings. Key considerations including the need for co-design of digital health interventions, outcome evaluation, and awareness of social inequities are highlighted to guide practice, education, and research.
... A pilot study of VR use in patients with life-limiting illnesses who were residents of a free-standing hospital facility with cancer, heart failure and pulmonary diseases, showed an overall trend of improvement on the Edmonton Symptom Assessment Scale (ESAS) of several symptoms after the VR intervention, namely pain, tiredness, drowsiness, depression, and anxiety. 2 Another study in an inpatient PC Unit also found important benefits for family members. 8 It is especially in cancer patients that the experience begins to emerge. Niki et al demonstrated that a one-time VR intervention in terminal cancer patients can lead to significant reductions in pain, tiredness, drowsiness, shortness of breath, depression, and anxiety. ...
... 13,14 Building on the relational foundation that underlies effective palliative care services, some service providers have incorporated legacy interventions as a tool for both therapeutic intervention and ongoing assessment of patient and family needs. 7,15,16 As individualized efforts to prompt reflection on one's unique qualities, hopes and goals, and perceived impacts on others, legacy interventions may help patients and providers connect in spaces of uncertainty to meet the social, emotional, and spiritual needs of patients and families pursuing or receiving palliative care services. 7 Across medical specialties, from palliative care to perinatology, and pediatrics to gerontology, it appears that legacy -in healthcare -is understood and deployed as a means for strengthening human attachments, maintaining connections with those who are deceased, and ensuring that individuals will be remembered regardless of the duration or circumstances of their lifetime. ...
Article
Background Legacy has been invoked as a means for strengthening human attachments, continuing bonds, and ensuring that individuals will be remembered; however, little is known about the spectrum of approaches to, outcomes associated with, and best practices for legacy interventions. Aim To systematically review research on legacy perceptions and interventions in pediatric and adult palliative care recipients. Design A systematic mixed studies review synthesizing quantitative, qualitative, and mixed-methods study findings using PRISMA guidelines. Data sources PubMed, PsycINFO, and CINAHL databases were searched on October 1, 2020. GRADE criteria were used to assess quality of quantitative reports, and the Johns Hopkins Evidence Level and Quality Guide was used to rate qualitative, mixed methods, and review articles. Data were synthesized using integrative thematic analysis. Results The 67 studies reviewed describe a variety of legacy perceptions and interventions with adult and pediatric patients receiving palliative care. Statistically significant improvements in various dimensions of wellbeing are documented, with significant reduction in incidence and symptoms of depression in adults. Studies highlight the utility, feasibility, and perceived benefits of legacy interventions according to adult patients and their caregivers, and parents/caregivers of pediatric patients. Conclusions Though future research with high-quality, experimental designs is needed, the positive outcomes associated with legacy interventions are documented in adult patient populations; additionally, the application of legacy interventions for children with serious illnesses receiving palliative care is reasonable based on the existing body of evidence. A consistent and operational concept of legacy is still needed for future research and practice.
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Background: Life review interventions have been used to alleviate psycho-spiritual distress in people near the end of life. However, their effectiveness remains inconclusive. Aim: To evaluate the effects of therapeutic life review on spiritual well-being, psychological distress, and quality of life in patients with terminal or advanced cancer. Design: A systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses methodology. Data sources: Five databases were searched from their respective inception through February 2017 for relevant randomized controlled trials. The effects of therapeutic life review were pooled across the trials. Standardized mean differences were calculated for the pooled effects. Heterogeneity was assessed using the I(2) test. Study quality was assessed using the Cochrane criteria. Results: Eight randomized controlled trials met the inclusion criteria. The pooled results suggested a desirable effect of therapeutic life review on the meaning of life domain of spiritual well-being (standardized mean difference = 0.33; 95% confidence interval, 0.12 to 0.53), general distress (standardized mean difference = -0.32; 95% confidence interval, -0.55 to -0.09), and overall quality of life (standardized mean difference = 0.35; 95% confidence interval, 0.15 to 0.56) when compared to usual care only. Of the three outcomes examined, only the pooled effect on overall quality of life remained statistically significant at follow-ups up to 3 months after the intervention (standardized mean difference = 0.82; 95% confidence interval, 0.47 to 1.18). Conclusions: Therapeutic life review is potentially beneficial for people near the end of life. However, the results should be interpreted with caution due to the limited number of randomized controlled trials and associated methodological weaknesses. Further rigorously designed randomized controlled trials are warranted.
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The Consolidated Standards of Reporting Trials (CONSORT) statement is a guideline designed to improve the transparency and quality of the reporting of randomised controlled trials (RCTs). In this article we present an extension to that statement for randomised pilot and feasibility trials conducted in advance of a future definitive RCT. The checklist applies to any randomised study in which a future definitive RCT, or part of it, is conducted on a smaller scale, regardless of its design (eg, cluster, factorial, crossover) or the terms used by authors to describe the study (eg, pilot, feasibility, trial, study). The extension does not directly apply to internal pilot studies built into the design of a main trial, non-randomised pilot and feasibility studies, or phase II studies, but these studies all have some similarities to randomised pilot and feasibility studies and so many of the principles might also apply. The development of the extension was motivated by the growing number of studies described as feasibility or pilot studies and by research that has identified weaknesses in their reporting and conduct. We followed recommended good practice to develop the extension, including carrying out a Delphi survey, holding a consensus meeting and research team meetings, and piloting the checklist. The aims and objectives of pilot and feasibility randomised studies differ from those of other randomised trials. Consequently, although much of the information to be reported in these trials is similar to those in randomised controlled trials (RCTs) assessing effectiveness and efficacy, there are some key differences in the type of information and in the appropriate interpretation of standard CONSORT reporting items. We have retained some of the original CONSORT statement items, but most have been adapted, some removed, and new items added. The new items cover how participants were identified and consent obtained; if applicable, the prespecified criteria used to judge whether or how to proceed with a future definitive RCT; if relevant, other important unintended consequences; implications for progression from pilot to future definitive RCT, including any proposed amendments; and ethical approval or approval by a research review committee confirmed with a reference number. This article includes the 26 item checklist, a separate checklist for the abstract, a template for a CONSORT flowchart for these studies, and an explanation of the changes made and supporting examples. We believe that routine use of this proposed extension to the CONSORT statement will result in improve
Article
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The Consolidated Standards of Reporting Trials (CONSORT) statement is a guideline designed to improve the transparency and quality of the reporting of randomised controlled trials (RCTs). In this article we present an extension to that statement for randomised pilot and feasibility trials conducted in advance of a future definitive RCT. The checklist applies to any randomised study in which a future definitive RCT, or part of it, is conducted on a smaller scale, regardless of its design (eg, cluster, factorial, crossover) or the terms used by authors to describe the study (eg, pilot, feasibility, trial, study). The extension does not directly apply to internal pilot studies built into the design of a main trial, non-randomised pilot and feasibility studies, or phase II studies, but these studies all have some similarities to randomised pilot and feasibility studies and so many of the principles might also apply. The development of the extension was motivated by the growing number of studies described as feasibility or pilot studies and by research that has identified weaknesses in their reporting and conduct. We followed recommended good practice to develop the extension, including carrying out a Delphi survey, holding a consensus meeting and research team meetings, and piloting the checklist. The aims and objectives of pilot and feasibility randomised studies differ from those of other randomised trials. Consequently, although much of the information to be reported in these trials is similar to those in randomised controlled trials (RCTs) assessing effectiveness and efficacy, there are some key differences in the type of information and in the appropriate interpretation of standard CONSORT reporting items. We have retained some of the original CONSORT statement items, but most have been adapted, some removed, and new items added. The new items cover how participants were identified and consent obtained; if applicable, the prespecified criteria used to judge whether or how to proceed with a future definitive RCT; if relevant, other important unintended consequences; implications for progression from pilot to future definitive RCT, including any proposed amendments; and ethical approval or approval by a research review committee confirmed with a reference number. This article includes the 26 item checklist, a separate checklist for the abstract, a template for a CONSORT flowchart for these studies, and an explanation of the changes made and supporting examples. We believe that routine use of this proposed extension to the CONSORT statement will result in improvements in the reporting of pilot trials. Editor’s note: In order to encourage its wide dissemination this article is freely accessible on the BMJ and Pilot and Feasibility Studies journal websites. Electronic supplementary material The online version of this article (doi:10.1186/s40814-016-0105-8) contains supplementary material, which is available to authorized users.
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Background Dignity therapy is psychotherapy to relieve psychological and existential distress in patients at the end of life. Little is known about its effect. Aim To analyse the outcomes of dignity therapy in patients with advanced life-threatening diseases. Design Systematic review was conducted. Three authors extracted data of the articles and evaluated quality using Critical Appraisal Skills Programme. Data were synthesized, considering study objectives. Data sources PubMed, CINAHL, Cochrane Library and PsycINFO. The years searched were 2002 (year of dignity therapy development) to January 2016. ‘Dignity therapy’ was used as search term. Studies with patients with advanced life-threatening diseases were included. Results Of 121 studies, 28 were included. Quality of studies is high. Results were grouped into effectiveness, satisfaction, suitability and feasibility, and adaptability to different diseases and cultures. Two of five randomized control trials applied dignity therapy to patients with high levels of baseline psychological distress. One showed statistically significant decrease on patients’ anxiety and depression scores over time. The other showed statistical decrease on anxiety scores pre–post dignity therapy, not on depression. Nonrandomized studies suggested statistically significant improvements in existential and psychosocial measurements. Patients, relatives and professionals perceived it improved end-of-life experience. Conclusion Evidence suggests that dignity therapy is beneficial. One randomized controlled trial with patients with high levels of psychological distress shows DT efficacy in anxiety and depression scores. Other design studies report beneficial outcomes in terms of end-of-life experience. Further research should understand how dignity therapy functions to establish a means for measuring its impact and assessing whether high level of distress patients can benefit most from this therapy.
Article
We describe a simple method for the assessment of symptoms twice a day in patients admitted to a palliative care unit. Eight visual analog scales (VAS) 0–100 mm are completed either by the patient alone, by the patient with nurse's assistance, or by the nurses or relatives at 10:00 and 18:00 hours, in order to indicate the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, and sensation of well-being. The information is then transferred to a graph that contains the assessments of up to 21 days on each page. The sum of the scores for all symptoms is defined as the symptom distress score. The Edmonton Symptom Assessment System (ESAS) was carried out for 101 consecutive patients for the length of their admission to our unit. Of these, 84% were able to make their own assessment sometime during their admission. However, before death 83% of assessments were completed by a nurse or relative. Mean symptom distress score was 410±95 during day 1 of the admission, versus 362±83 during day 5 (p<0.01). Mean symptom distress scores throughout the hospitalization were 359±105, 374±93, 359±91 and 406±81 when the ESAS was completed by the patient alone, patient with nurse's assistance (p=N.S.), nurse alone (p=N.S.), or relative (p<0.01) respectively. We conclude that this is a simple and useful method for the regular assessment of symptom distress in the palliative care setting.
Article
BACKGROUND: Some terminal cancer patients wish to "go to a memorable place" or "return home." However, owing to various symptom burdens and physical dysfunction, these wishes are difficult for them to realize. OBJECTIVE: The aim of the study is to verify whether simulated travel using virtual reality (VR travel) is efficacious in improving symptoms in terminal cancer patients. DESIGN: This is a prospective, multicenter, single-arm study. SETTING/SUBJECTS: Twenty participants with terminal cancer were recruited from two palliative care wards; data were collected from November 2017 to April 2018. MEASUREMENTS: The VR software Google Earth VR® was used. The primary endpoint was the change in the Edmonton Symptom Assessment System scores for each symptom before and after VR travel. RESULTS: The average age of the participants was 72.3 (standard deviation [SD] = 11.9) years. Significant improvements were observed for pain (2.35, SD = 2.25 vs. 1.15, SD = 2.03, p = 0.005), tiredness (2.90, SD = 2.71 vs. 1.35, SD = 1.90, p = 0.004), drowsiness (2.70, SD = 2.87 vs. 1.35, SD = 2.30, p = 0.012), shortness of breath (1.74, SD = 2.73 vs. 0.35, SD = 0.99, p = 0.022), depression (2.45, SD = 2.63 vs. 0.40, SD = 0.82, p = 0.001), anxiety (2.60, SD = 2.64 vs. 0.80, SD = 1.51, p < 0.001), and well-being (4.50, SD = 2.78 vs. 2.20, SD = 1.99, p < 0.001; pre- vs. post-VR travel score, respectively). No participants complained of serious side effects. CONCLUSIONS: This preliminary study suggests that VR travel can be efficacious and safe for terminal cancer patients for improving symptom burden.
Article
Background Patients with a terminal disease report a high need for psychosocial and spiritual support. Previous literature reviews on psychosocial interventions in palliative care were restricted to certain subtypes of techniques, included a wide range of patients, conditions, and settings, or required a number of sessions unrealistic to be achieved in patients nearing the end of their lives. Aim The aim of this study was to review and synthesize the evidence on brief psychosocial interventions (i.e. four sessions or less and less than 21 days) for patients receiving palliative treatment. Design We performed a systematic review and meta-analysis in accordance with standard guidelines and a pre-registered protocol (PROSPERO: CRD42018082713). Data sources Electronic databases, journals, and references were searched for controlled clinical trials. We used the Cochrane criteria to assess the risk of bias within studies. Results In total, 15 studies met the eligibility criteria and reported the effects of 17 interventions and a total of 1248 patients. The most frequently used techniques were life review techniques and music therapy. After exclusion of outliers, psychosocial interventions showed to be superior with regard to the improvement of quality of life (effect size = 0.36, confidence interval = 0.08 to 0.64), and the reduction of emotional (effect size = −0.51, confidence interval = −0.77 to −0.26) and existential distress (effect size = −0.40, confidence interval = −0.71 to −0.07) compared to the control groups. Conclusion Brief psychosocial interventions can improve clinically relevant health outcomes and should therefore be made available for patients receiving palliative care.
Article
Introduction: Reminiscence therapy (RT) is a popular psychosocial intervention widely used in dementia care. It involves discussion of past events and experiences, using tangible prompts to evoke memories or stimulate conversation. Areas covered: The aim of this review is to evaluate the effectiveness of RT for people with dementia. It includes studies from the specialized register of the Cochrane Dementia and Cognitive Improvement Group (ALOIS). Searches yielded 185 records of which 22 (n=1972) were eligible for inclusion. The meta-analysis comprised of data from 16 studies (n=1,749 participants). The review included four large multicentre high-quality studies and several smaller studies of reasonable quality. Outcomes of interest were quality of life, communication, depression, and cognition at post-treatment and later follow-up. Expert Commentary: RT has the potential to improve psychosocial outcomes for people with dementia. Effects are small and can be inconsistent, varying across intervention modality and setting. Individual approaches were associated with improved cognition and mood. Group approaches were linked to improved communication. The impact on quality of life appeared most promising in care home settings. Diversity in reminiscence approaches makes it difficult to compare them, and the field would benefit from the development, evaluation, use, and sharing of standardized approaches.
Article
Context: Feasibility and pilot study designs are common in palliative care research. Finding standard guidelines on the structure and reporting of these study types is difficult. Objectives: In feasibility and pilot studies in palliative care research, to determine (1) how commonly a priori feasibility are criteria reported and whether results are subsequently reported against these criteria?; and (2) how commonly are participants' views on acceptability of burden of the study protocol assessed? Methods: Four databases (OVID Medline, EMBASE, CINAHL, and PubMed via caresearch.com.au.) were searched. Search terms included palliative care, terminal care, advance care planning, hospice, pilot, feasibility, with a publication date between 1 January 2012 and 31 December 2013. Articles were selected and appraised by two independent reviewers. Results: Fifty-six feasibility and/or pilot studies were included this review. Only three studies had clear a priori criteria to measure success. Sixteen studies reported participant acceptability or burden with measures. Forty-eight studies concluded feasibility. Conclusion: The terms 'feasibility' and 'pilot' are used synonymously in palliative care research when describing studies that test for feasibility. Few studies in palliative care research outline clear criteria for success. The assessment of participant acceptability and burden is uncommon. A gold standard for feasibility study design in palliative care research that includes both clear criteria for success and testing of the study protocol for participant acceptability and burden is needed. Such a standard would assist with consistency in the design, conduct and reporting of feasibility and pilot studies.